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Unexpected Words: Our Family’s Story~Chapter 12

As the week progressed, we became increasingly thankful for the small comforts that were making our new life in the hospital bearable. Richard and

Celebrating Annie's first few words...with cake!

Lori Cole, dear friends from our Maryland church, offered to set up and maintain an email newsletter of our family’s progress. This was a pre-blog /CaringBridge era, but many folks had access to email. The Coles’ kind writing not only allowed folks to receive updates, but also gave specific prayer requests. This saved us from having to repeat stories, and allowed us to conserve energy as well.

Another family sent us a package containing an herbal neck wrap. This soft wrap, filled with lavender and beads, could be warmed in the microwave and used to soothe tense muscles. I enjoyed this bit of pampering, along with a cup of tea, every night after I had tucked Annie into bed. Yet another friend mailed scented hand lotion for us, knowing the hospital soap was drying, with a strong (read: nauseating!) smell. And one afternoon, my mother and sister arrived at the hospital with a lovely pink sweater set for me to wear. Having something new and pretty to wear lifted my spirits on an otherwise bleak day.

One afternoon, our room phone rang and I was delighted to hear Kassi’s voice. A close friend from our Bible Study group, she had been in constant contact with us as events transpired. We chatted briefly and then she said, “What would you think if I came to visit for a day? A friend of mine needs to be in Cleveland next week, and I can drive with her…”

My response traveled rapidly across the phone lines: “YES!” Having Kassi would be a welcome relief from the crowded loneliness of the hospital, and I couldn’t wait to enjoy a little girl-time with her.

The day came quickly, and Annie was as delighted as I to have Kassi with us. Her energetic, comfortable personality gave a deep sense of fun to the day; we laughed heartily and talked incessantly. Tom’s parents visited that day as well, and it seemed to be a time for joy. When Grandpa Win asked, “Do you like ice cream?” Annie replied, “Yeah.” The word was soft and weak, but it was understandable, and we were thrilled.

As we visited, I noticed that Dr. Bass had appeared in our doorway. Eager to have her meet Kassi, I began introductions. Dr. Bass smiled and said hello, but quickly returned to business. “We really need to talk.”

“Okay~” I began.

“Not here.” She stepped toward Tom and me and said softly, “I don’t believe in sharing bad news in front of children.”

My heart began to race. I spun around and looked at Kassi. Without missing a beat, she smiled and said, “I’m going to hang out with Annie; you all go on and have your meeting!” She then engaged Annie in a new book she had brought, settling onto the bed and showing Annie the pictures. How I loved my take-charge friend…she was just the comfort I needed in that moment.

Tom and I, along with his parents, followed Dr. Bass down the hallway to a family conference room. We sat down and looked expectantly at her. “We have a diagnosis for your daughter,” she began. “The whole neurology team, along with the radiologists and other specialists have been working on this together. We believe that Annie has idiopathic Moyamoya disease .” The disease, she explained, caused Annie’s carotid arteries to become narrow; they were failing to provide enough blood to the brain. To compensate, Annie’s brain had formed other blood vessels, which had started to bleed. “The problem with this disease,” she said, “is that it is progressive.” She explained that the best treatment is surgery on her brain. Without the surgery, she would continue to have strokes, which would cause more damage. Eventually, she could die.

Dr. Bass continued her explanation, and told us that we would be meeting with a neurosurgeon to learn more about the procedure. She answered a few more questions, and then excused herself. Tom’s mother kissed him on the head as his tears fell, and then we were left alone. We had no words at all. We held each other and sat quietly for a while, and then rejoined Annie and Kassi. Tom wanted to play with Annie for a while, so Kassi and I chatted. It felt so good to talk this through with her! I was immensely thankful that she had made the trip to see me. We hadn’t known that this would be our “diagnosis day,” but God knew.

Late in the afternoon, Kassi left to head for home. My mind was still reeling from the information we had received. The only parts of Dr. Bass’s words I could remember were “progressive…more strokes…eventual death…” I couldn’t retrieve any more of the plan, and I ruminated on these words, my mind stuck on the grim details. This led to tears of panic and grief that I could not stop, and I cried for the majority of the afternoon. Not wanting to have Annie see my distress, I went to the hospital Atrium, bought some mashed potatoes, and tried to eat. The tears continued to fall.

I sensed that someone was by my side, and I glance up. It was Dr. Bass, along with a small group of residents. “What is going on here?” she said softly.

“I’m just so afraid.” I choked out, my sobs making my words imperceptible.

“Okay. It’s going to be okay,” Dr. Bass soothed. “I’ll come up and see you around 5 pm after we’re finished. I promise I’ll come.”

When she arrived back on our floor, I was sitting on the window seat down the hall from Annie’s room. Dr. Bass sat down next to me. I looked at her, and the tears began flowing again.

“I just want to take her home,” I sobbed.

Dr. Bass put her arm around me. “You’re going to get to take her home.”